Table 3 Characteristics of the included studies

Papers

Multiple papers reporting on different aspects of a single study (16 papers reported on 6 research studies).

One study across 4 papers

• Johnstone et al. [40, 41, 41, 42, 42, 43, 43, 44]

• Washington et al. [33, 57] and Khosla et al. [44, 45, 45, 46, 46, 47]

One study across 2 papers

• de Graaff et al. [34, 35, 35, 36]

• Roider-Schur et al. [52, 53] and Schrank et al. [53, 54]

• Nielsen et al. [50, 51, 51, 52]

• Torres et al. [55, 56] and Milberg et al. [48, 49]

Study design

Qualitative studies

• Grounded theory - Bellamy and Gott [32], Green et al. [38, 39]

• Ethnography - Nielsen et al. [50, 51, 51, 52]

• Phenomenological – Debesay et al. [33], Henry and Timmins [39, 40]

• Qualitative exploratory descriptive design - Johnstone et al. [40, 41, 41, 42, 42, 43, 43, 44], Shahid et al. [54, 55]and Vincent et al.[56, 57]

• Qualitative approach not specified - de Graaff et al. [34, 35, 35, 36], de Voogd et al. [36, 37], Eckemoff et al. [37, 38], Khosla et al. [44,45,46], Mahilall et al. [47], Milberg et al. [48], Neiman [49], Roider-Schur et al. [52], Schrank et al. [53], Torres et al.53 and Washington et al. [57]

Country of origin

• Austria [52, 53]

• Australia [38, 40,41,42,43]

• Canada [50, 51, 56]

• Ireland [39]

• Netherlands [34,35,36]

• New Zealand [30]

• Norway [33]

• Sweden [48, 55]

• United States [37, 44,45,46, 49, 57]

• South Africa [47].

Data collection methods

• Interviews, face-to-face – Bellamy and Gott [32], Debesay et al. [33], de Graaff et al. [34, 35], Eckemoff et al. [37], Henry and Timmins [39], Johnstone et al. [40,41,42,43], Khosla et al. [44,45,46], Neiman [49], Nielsen et al. [50, 51], Roider-Schur et al. [52], Schrank et al. [53], Shahid et al. [54], Vincent et al. [56], Washington et al. [57]

• Telephone interviews - Shahid et al. [54], Vincent et al. [56]

• Focus groups - Bellamy and Gott [30], de Voogd et al. [36], Khosla et al. [44,45,46], Green et al. [38], Mahilall et al. [47], Milberg et al. [48], Neiman [49], Torres et al. [55] and Washington et al. [57]

• Observation - Nielsen et al. [50, 51]

Themes

• Communication and connection [33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48, 48, 49, 49, 50, 50, 51, 51,52,53,54, 54, 55, 55, 56, 56, 57, 57]

• The role of the family in death and dying [33]

• The role of education in addressing uncertainty [33, 34, 34, 35, 35, 36, 36, 37, 37, 38, 38, 39, 39, 40, 40, 41, 45, 46, 46, 47, 47, 48, 48, 49, 49,50,51,52, 52, 53, 53, 54, 54, 55, 55, 56, 56, 57, 57]

• Institutional and societal factors [33,34,35,36,37,38,39,40,41,42,43, 43, 44, 44,45,46, 46, 47, 47, 48, 48, 49, 49, 50, 50, 51, 51, 52, 52, 53, 53, 54, 54, 55, 55, 56, 56, 57]